University of Sherbrooke Faculty of Law, Room A7-235

This workshop will be presented by Amélie Ouellet*, Nurse, M.Sc., Direction des programmes de déficience intellectuelle, trouble du spectre de l'autisme et déficience physique, CIUSSS de l'Estrie - CHUS. Lecturer in Care Ethics, School of Nursing, Health Campus, Université de Sherbrooke.

This presentation will address the ethical responsibility of nurses to defend the rights of adults with intellectual disabilities and their families in a hospital care setting. This vulnerable population will often see their situation become more vulnerable during hospitalization episodes. The nurse, both through her privileged role at the bedside and with her family and through her constant presence on the care units, must be able to defend the rights of these patients with more complex needs, who are not necessarily able to verbalize them as accurately as the general public. Moreover, this role is an integral part of the legislative context of nursing as a profession. This concept of advocacy was borrowed from the field of law and appeared in nursing literature around the 1970s as a form of denunciation of the paternalistic movement at this time. Several nursing authors attempted to define the concept of advocacy, but these definitions vary according to the context. Bu and Jezewski's (2007) theory, one of the two theories guiding our study, defines this concept as safeguarding patients' autonomy, acting for their well-being and acting as an advocate for social justice in the provision of health care. However, it appears that a lack of knowledge persists regarding the nursing role of advocacy, particularly among this clientele. In addition, recent scientific literature shows that several barriers to this role exist, including lack of nursing staff, overwork, lack of organizational support, etc... In order to better understand these gaps in nursing practice, our case study of this clientele, their families, nurses and managers aimed to describe the lived experience of these participants in a hospital setting. For the patient-family, the results obtained show that the advocacy experience remains contextually complex, both in terms of the particularities of their health situation and in terms of the nurse's mixed and partially accomplished advocacy experience. With respect to the lived experience of nurses and managers, their personal and professional characteristics shape this advocacy practice. The experiences of all these participants intersect with issues related to nursing ethical practice, nurse ethical education, managerial supervision and governance issues. The latter stem from the context of the reorganization of the health system and accentuate the situation of vulnerability of this clientele, further increasing the need to defend their rights. Our research results lead us to conclude that there is a need to renew the ethical competence of nurses and managers to optimize this advocacy role in order to improve the quality and safety of care provided to this clientele and their families whose needs are not adequately met.

* Under the direction of: Pre Chantal Doré, PhD, Associate Professor, School of Nursing, Institut universitaire de première ligne en santé et services sociaux, Université de Sherbrooke; Pre Louise O'Reilly, Nurse, PhD, Researcher and Consultant in the field of humanist practices, Visiting Professor, Institut et Haute École de la Santé La Source - HES-SO - Lausanne and Associate Professor, Université de Sherbrooke and Université de Montréal.